Former Wilmington resident works on film with subject close to heart

Wednesday

Jan 23, 2013 at 10:06 AM

Jocelyn Leroux's candle burned brightly during her time here in Wilmington.

By Zach HannerBreakingnews@StarNewsOnline.com

Jocelyn Leroux's candle burned brightly during her time here in Wilmington. An actor, dancer, choreographer, producer, mom and more, Leroux was familiar to theater audiences for her myriad shows and had also dug her heels in to the film industry, choreographing and serving as personal assistant to Screen Gems Executive Vice President Bill Vassar.But after moving to Denver two years ago. Leroux found all these avenues of her life converging and combining in to one project. "I accepted the position as the assistant director of a performing arts school in Denver. I started an acting program there and was teaching dance and working as a talent agent, and Ellie was one of my students."Ellie White is a talented, outgoing young girl who belonged to The Silhouettes, a dance team that Leroux helped coach. The team competed in season six of "America's Got Talent," and finished runners-up. But prior to all that, Ellie had discovered something that would alter, and possibly end, her life."During our travels for that show I became close with Ellie and her mom, Beth, but I was not aware that there was anything wrong with Ellie outside of type I diabetes." As it turns out, that condition is a symptom of a rare genetic disorder called Wolfram Syndrome.With a life expectancy of only 30 years on average, those who suffer from Wolfram experience a cruel decline that begins with loss of vision and hearing then progresses to an overall inability to control one's muscles. Eventually, they lose control of their breathing and perish."I wanted to create a voice for Ellie so I decided to make a short film and enter it into festivals," Leroux said. "I wanted to let people know what was happening to her and to give them a place where they could donate in order to help her. Serendipity ensued immediately."The film was titled "A Light in the Shadows "and she brought Ellie to Wilmington last July to shoot a trailer for a crowd-sourcing campaign, enlisting former Wilmingtonian Joel Fernando as director of photography. She ran into old friend Billy Mellon, owner of Princess Street restaurant Manna, and he offered to pitch in."Nine days later the first annual Ellie White Foundation for Rare Genetic Disorders fundraiser happened in Wilmington and just over $10,000 was raised," Leroux said.Leroux and Ellie then attended a seminar at St. Louis' Washington University for Wolfram's researchers and patients. It was then that the filmmaker realized her work was only partially done. "When I met all these other people, I knew this was a feature film and not a short just about Ellie," Leroux said. She put everything in storage and started couch hopping and working day and night to find money, set up interviews and keep the cameras rolling. She also reconnected with Fernando and asked him to help capture these other stories that would figure into her film. "This project has been an incredible adventure, and we're putting the pieces of the puzzle together as we speak," Fernando said.One piece was Leroux's choice of Adam Zwan as a subject. She knew the 25 year-old was one of 18 people currently diagnosed with Wolfram but was unaware that he lived in Wilmington. "I nearly hit the floor when he told me," Leroux said.So Leroux returned to Wilmington once again for her story. But this effort was fraught with drama nearly from the start. Leroux and Fernando began shooting on Jan. 7, and just a few days later Zwan was hospitalized."His entire gastrointestinal system shut down from his esophagus to his colon," Leroux said.After a week in the hospital, Zwan was released and returned home. He's awaiting a prescription of drugs that have proven helpful to his condition. The drugs, however, were taken off the market in the 1990s for their side-effects, take time to produce and Zwan will likely wait at least a few more weeks for their arrival, hoping to avoid another episode.Meanwhile the story continues to unfold. With European Wolfram patients to interview, Leroux has enlisted the help of Demetri Jagger, nephew of Rolling Stone Mick, to serve as her European producer. The two met while working years ago on the feature film "Bolden." For Fernando, the goal is to simply react to what unfolds with as much aplomb as possible and do his best to capture it. "Due to the nature of the film and the people we are making the film about, it's been necessary for us to keep our options open and be flexible."Leroux hopes to raise another $100,000 to complete principal photography, edit and process the completed version, market the film for festivals and distribution and, just maybe, pay herself to at least cover her storage unit fees. But any money that the film manages to make will go to Ellie's foundation. "I want to give money to go to research and treatment right away so that they can make a breakthrough now," Leroux said. "Ellie and Adam and everyone with Wolfram Syndrome needs it to happen today – not tomorrow."Donations to help in the making of "A Light In The Shadows" can be made at www.goelliego.com